Support for people with rare conditions?

Indie_Kid

I have just been diagnosed with a rare condition. I've looked online and there appears to be no group for this particular condition. (and very little information - explaining it to my parents is going to be difficult)

Does anyone know if there are general support groups for people who have rare conditions please?

kazzah60

Yes there is - it;s called Contact a Family and is specifically set up for rare conditions- they may already have someone on their "register" with the same condition that they can put you in touch with
they are wonderful people and you can contact them here;
http://www.cafamily.org.uk/

pipkin71

What's the rare condition, sh?

Perhaps someone else will have heard of a support group for it??

Indie_Kid

Optic atrophy.

I found very little information on the RNIB site. Will get in touch with them. Strangely enough, I did manage to find a Facebook group about it - was not expecting that!

GlasweJen

http://www.mdjunction.com/optic-atrophy

not sure how active it is, have you tried searching for Leber's atrophy? I know that's a historic name for it but it might turn up something?

nannytone_2

http://www.rnib.org.uk/getinvolved/onlinecommunity/Forum/Pages/forum.aspx

this is a forum i use (i have RP) and i have seen postings about optic atrophy. hope it helps!